Sheikh Mohammed bin Rashid, Vice President and Ruler of Dubai, is to cover Dh7 million ($1.9 million) in medical treatment for a young girl with spinal muscular atrophy.
The announcement came after Yaqeen Kankar’s uncle posted a video on social media appealing for help to save her life.
In the video, he said the Syrian girl, who will soon turn two, suffers from a degenerative and debilitating disease. Doctors diagnosed spinal muscle atrophy (SMA) – a genetic disorder that weakens and wastes muscles - and her uncle asked for help with the cost of her treatment, which is available in only a few centres globally, including Al Jalila Hospital in Dubai.
Yaqeen’s father, Ibrahim Kankar, 27, told The National of his surprise when the office of Sheikh Mohammed informed him that the Ruler of Dubai would cover the costs in full.
“Sheikh Mohammed bin Rashid is the father of all children. This action is not strange from the UAE and its rulers,” Mr Kankar said.
“I couldn’t believe that three days after posting the video, with the help of the UAE’s Charity International Organisation, my daughter will survive and live a normal childhood. You don't know how that feels.”
Critical need
Mr Kankar, who lives in Sharjah, said doctors gave Yaqeen only months to live if she could not undergo the expensive treatment.
“Her health condition is very critical and she needs urgent treatment which we can’t afford,” he added. “Me and her mother are thrilled and full of joy knowing she will now get it. These unforgotten moments will last long in our memory.”
Yaqeen is Mr Kankar's only child. “She has symptoms that we couldn’t understand like not being able to interact with her surroundings. After many failed attempts to diagnose her disease, we came to the UAE where we found care and mercy,” he said.
Dr Khaled Abdul Wahab Al Khaja, secretary general of the International Charity Organisation, praised the generous gesture. “Sheikh Mohammed represents a model for unlimited humanitarian work,” Mr Al Khaja said.
The organisation sponsored the girl’s case by posting a plea on their website and social media.
“Her family has a poor income and it was impossible for them to pay the cost of treatment,” Mr Al Khaja added. "Sheikh Mohammed is the supporter for any person in need in the UAE."
Looking to the future
Dubai Health's Al Jalila Children Hospital welcomed Yaqeen on Thursday and examined her with the necessary tests.
"The medical team has commenced essential diagnostic procedures, including genetic and antibody testing," a statement read. "All necessary evaluations are under way in preparation for administering gene therapy. Throughout this process, Yaqeen’s condition will be closely monitored and managed to maintain the highest standards of paediatric care."
SMA is a condition that affects the motor neurons (nerve cells that transmit impulses to the muscles) and weakens the limbs. It makes walking difficult or impossible and creates problems with swallowing, as well as breathing.
The treatment offered by Al Jalila Children's Hospital, called Zolgensma, is given once and is a form of gene therapy.
It was approved by the US Food and Drug Administration four years ago and has been described as the most expensive drug in the world.
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About RuPay
A homegrown card payment scheme launched by the National Payments Corporation of India and backed by the Reserve Bank of India, the country’s central bank
RuPay process payments between banks and merchants for purchases made with credit or debit cards
It has grown rapidly in India and competes with global payment network firms like MasterCard and Visa.
In India, it can be used at ATMs, for online payments and variations of the card can be used to pay for bus, metro charges, road toll payments
The name blends two words rupee and payment
Some advantages of the network include lower processing fees and transaction costs
Crops that could be introduced to the UAE
1: Quinoa
2. Bathua
3. Amaranth
4. Pearl and finger millet
5. Sorghum
Boulder shooting victims
• Denny Strong, 20
• Neven Stanisic, 23
• Rikki Olds, 25
• Tralona Bartkowiak, 49
• Suzanne Fountain, 59
• Teri Leiker, 51
• Eric Talley, 51
• Kevin Mahoney, 61
• Lynn Murray, 62
• Jody Waters, 65
What is the FNC?
The Federal National Council is one of five federal authorities established by the UAE constitution. It held its first session on December 2, 1972, a year to the day after Federation.
It has 40 members, eight of whom are women. The members represent the UAE population through each of the emirates. Abu Dhabi and Dubai have eight members each, Sharjah and Ras al Khaimah six, and Ajman, Fujairah and Umm Al Quwain have four.
They bring Emirati issues to the council for debate and put those concerns to ministers summoned for questioning.
The FNC’s main functions include passing, amending or rejecting federal draft laws, discussing international treaties and agreements, and offering recommendations on general subjects raised during sessions.
Federal draft laws must first pass through the FNC for recommendations when members can amend the laws to suit the needs of citizens. The draft laws are then forwarded to the Cabinet for consideration and approval.
Since 2006, half of the members have been elected by UAE citizens to serve four-year terms and the other half are appointed by the Ruler’s Courts of the seven emirates.
In the 2015 elections, 78 of the 252 candidates were women. Women also represented 48 per cent of all voters and 67 per cent of the voters were under the age of 40.
ONCE UPON A TIME IN GAZA
Starring: Nader Abd Alhay, Majd Eid, Ramzi Maqdisi
Directors: Tarzan and Arab Nasser
Rating: 4.5/5
Tamkeen's offering
- Option 1: 70% in year 1, 50% in year 2, 30% in year 3
- Option 2: 50% across three years
- Option 3: 30% across five years
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Company profile
Company name: Suraasa
Started: 2018
Founders: Rishabh Khanna, Ankit Khanna and Sahil Makker
Based: India, UAE and the UK
Industry: EdTech
Initial investment: More than $200,000 in seed funding
Labour dispute
The insured employee may still file an ILOE claim even if a labour dispute is ongoing post termination, but the insurer may suspend or reject payment, until the courts resolve the dispute, especially if the reason for termination is contested. The outcome of the labour court proceedings can directly affect eligibility.
- Abdullah Ishnaneh, Partner, BSA Law
MATCH INFO
Uefa Champions League semi-final, first leg
Bayern Munich v Real Madrid
When: April 25, 10.45pm kick-off (UAE)
Where: Allianz Arena, Munich
Live: BeIN Sports HD
Second leg: May 1, Santiago Bernabeu, Madrid
How to help
Send “thenational” to the following numbers or call the hotline on: 0502955999
2289 – Dh10
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6025 – Dh20
6027 – Dh 100
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OPENING FIXTURES
Saturday September 12
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Brighton v Chelsea
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To be rescheduled
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Manchester City v Aston Villa
Global Fungi Facts
• Scientists estimate there could be as many as 3 million fungal species globally
• Only about 160,000 have been officially described leaving around 90% undiscovered
• Fungi account for roughly 90% of Earth's unknown biodiversity
• Forest fungi help tackle climate change, absorbing up to 36% of global fossil fuel emissions annually and storing around 5 billion tonnes of carbon in the planet's topsoil
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The biog
Favourite food: Fish and seafood
Favourite hobby: Socialising with friends
Favourite quote: You only get out what you put in!
Favourite country to visit: Italy
Favourite film: Lock Stock and Two Smoking Barrels.
Family: We all have one!
Seemar’s top six for the Dubai World Cup Carnival:
1. Reynaldothewizard
2. North America
3. Raven’s Corner
4. Hawkesbury
5. New Maharajah
6. Secret Ambition
